Anyone dealing with Atypical Ductal Hyperplasia (ADH)?
I am sorry if this is not the right forum. I know ADH is not cancer and this is a breast cancer forum, but I can't find another forum that may be more relevant.
I am wondering if there is anyone who is dealing with ADH or has been diagnosed with ADH that can share their experience. I was diagnosed a month ago. While I am relieved that I don't have cancer, I am confused with the radiology report that shows BI-RAD6 - surgical removal is recommended. I have seen a breast oncology surgeon and I don't think she took me seriously because I don't have cancer. It almost feels like I wasted her time seeing her because I don't have cancer. If ADH is no big deal, why BI-RAD 6 (which i understand is for biopsy proven malignancy). I also read up about ADH online and understand that with ADH, my risk for breast cancer is 4x. Should I not worry about it and just do annual check? Should i see another breast surgeon? Should I see an oncologist? Do I need genetic testing to better understand my risk? I feel like an impostor for even posting this on a breast cancer forum but I am genuinely confused and concerned. Any help will be greatly appreciated.
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Hi @sugardoll4, welcome to Connect. You'll notice that I moved your message to this existing discussion about atypical ductal hyperplasia (ADH). I did this so that you can meet other members like @elsajohnson @cindylb @elsie37 @sushilady1 @confused76 @khauff @amy11559 and more who are also talking about ADH, choices and what to expect. Click VIEW & REPLY to read through past messages.
You may also be interested in this discussion:
- High risk, NOT from BRCA but from typia, such as ALH, ADH, LCIS https://connect.mayoclinic.org/discussion/high-risk-not-from-brca-but-from-typia-such-as-alh-adh-lcis/
Sugardoll, did you talk to your oncologist or surgeon about your concerns that the symptoms you're experiencing (nipple discharge and pain) not matching the diagnosis?
@sugardoll4 Hi - In June 2018 during my annual mammogram screening the radiologist requested magnified views where he discovered micro-calcifications in my right breast that appeared to be vascular (linear) and scheduled a recheck for 6 months later. At the recheck in December 2018 (again w/ mag views) he could then see a cluster of micro-calcifications that presented differently than the vascular ones. I had a stereotactic biopsy and I received the diagnosis of atypical ductal hyperplasia. I had no symptoms or pain - all was discovered during routine screening. I continued on to have the surgical biopsy to rule out DCIS which was negative. I am now facing prophylactic medication because of my high risk category for developing breast cancer.
I understand that PASH is a benign condition. Does your doctor think that the pain and discharge is from the PASH? I am assuming your radiology report advises a surgical biopsy for the ADH - mine did. The surgical consult is the next logical step. When do you go for that?
Hello, new to this forum and diagnosis. Just recently, a MRI found a non-mass enhancement in my left breast. fast forward to MRI guided biopsy, my diagnosis is atypical ductal hyperplasia with PASH. My initial symptoms were breast pain and bloody nipple discharge only when i "expressed" it. I found the discharge because my nipple was very painful initially and currently remains painful. My question is do my symptoms match up with my diagnosis or could something still be missing? I have a surgical consult in a few weeks for next steps. Thank you!
I am same timeline and same diagnosis. I am scheduled for surgery. I would continue looking until you find a surgeon that will respect your decision. I’m sorry you have to go through this too.
Hi! Just saw your post and my situation is very similar. I am scheduled for a mastectomy in April. Did you decide on the same?
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1 ReactionT-shirt saying tells it like it is❤️
My understanding is that ADH or ALH is not technically 'cancer' but pre cancer. It may become an invasive cancer or may not. That's the challenge we face as patients and that doctors face. Removing them in a lumpectomy surgery would eliminate those cells that could potentially become cancer.
I had ADH in 1982 my doctor did not hesitate removing the mass since apparently it is a known fact that this can turn into cancer. At that time I had no idea about this and looking back I am glad my doctor did the surgery.
I have since had breast cancer in 2016.
Terrible and uncaring response, "plenty of women take it." But plenty cannot. Still, why don't you give the meds a try? If they are not for you and the side effects are not tolerable, then absolutely quit. Giving the drugs a try means you know you have explored all the options. They called ADH cancerous cells? Again, terrible and inaccurate! You may get better advice at the "cancer prevention" center. Please share after the 8th, if you wish. One piece of advice I'll share is from a Nurse Practicioner at one of those "cancer prevention" centers who advised waiting a year after an atypia diagnosis (like yours) to see how increased surveillance goes for you over a year's time and to see how you feel about it. Your diagnosis does not require immediate action and it is likely you will have a different perspective after a year--not necessarily a change in your decision, but you'll have a year to digest this upsetting news, do some research, talk to some experts, etc. That will provide a different perspective. Best of luck to you, @confused76. Indeed it is a confusing time when newly diagnosed with ADH.
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2 ReactionsHugs to you confused76.............You are facing the really hard decisions right now. It sounds like you might want to get a second opinion from another group of doctors. When my husband was diagnosed with terminal cancer (of an unknown source) the doctor we had handled things very poorly. We requested a second opinion and our first group of doctors paid for that meeting (amazingly)....you may not be able to get that 'deal' but your health is too important not to find a doctor and practice group that you trust and to whom you can relate.
Also, you should go ahead with any biopsy and surgery to remove the ADH. Make sure your feelings are known about getting clean margins and request the results of your pathology in writing (I keep all of my records myself and I've learned to read them).
I don't know about melanoma and breast cancer but it does seem to be true that if your body will make cancer of one type it may want to make other cancers as well.
Keep us posted and be assured that by being an active participant in your cancer you can find a doctor who will listen and honor your questions and decisions.
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